I’ve had the first initial 6 doses of BCG then after a flexible cystoscope I had another 3 doses which left me with unbearable cystitis. I have since had another 3 doses of BCG and the cystitis was that unbearable my nurse ( who administers the treatment at home ) actually stayed around for an hour to take the BCG back out of my bladder . My last treatment was at the beginning of April and the cystitis is still very bad with constant visits to the toilet during the day and night ( about 8 or 9 times during the night). I also have an enlarged prostate which doesn’t help emptying my bladder and seems to press on my bowels causing me to open them . I have been told the next three treatments will be more aggressive and I don’t think I can stand it and now think of having my bladder removed . Is anyone going through anything similar.
Hi sport. Not had personal experience of this, but this problem comes up fairly often on here so you are not on your own. I am sure people will be along to share experiences of BCG cystitis and offer some advice. Best wishes.
Hi sport, so sorry to hear you have experienced such a bad reaction to the BCG. Response to the doses really does vary between individuals, and severity definitely seems to be cumulative. I had 27 doses completing July 21. Some doses left me feeling flu-like, many seemed to have a minimal effect. But BCG does cause damage inside the bladder. I was a bit shocked by the redness and angry patches left in my bladder at my last flexi which was 8 months after the last dose. I haven't suffered any pain so I'm thinking I must not be very sensitive 
I'm hoping overtime my bladder lining will return to normal. So far for past year I am all clear. Cystitis is truly horrible so I hope you get a chance to talk through the next steps of your treatment with your CNS and make a choice which works for you. Sending best wishes.
